If the diagnosis is known, complications will not come as a surprise and can be treated promptly and appropriately.

There's also now a treatment called tolvaptan, which can slow the growth of cysts and may be beneficial in some cases.

If you're considering being screened for ADPKD or having your children screened, you should discuss the advantages and disadvantages of screening with your GP, partner and family.

You may also want to ask for a referral to see a kidney specialist.

How screening is carried out

There are 2 methods that can be used to confirm a diagnosis of ADPKD.

They are:

using an ultrasound, CT or MRI scan to check for kidney abnormalities

in special circumstances, using genetic blood tests to determine whether you have inherited one of the genetic faults known to cause ADPKD in your family – but as these genetic tests are expensive and can be difficult to interpret, they're not routinely carried out at present

It's important to be aware that neither test is entirely accurate and may not always detect ADPKD, even if you have the condition.

Imaging tests may miss very small cysts in younger people and will need to be repeated later in life.

Genetic testing is more sensitive and accurate in diagnosing ADPKD, but may be negative in 10% of people with ADPKD.